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Old 03-08-2010, 10:41 AM   #1
Julie2
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insomnia

I am not able to sleep during the night, sometimes I go with out sleep the whole night. Anybody has any solutions for this.

Thanks,
Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 03-08-2010, 11:31 AM   #2
WolverineFan
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Re: insomnia

I used to be a very sound sleeper, but not anymore. I tried everything I could think of, with no luck. My onc prescribed a light sleeping pill (15 mg of Restorill) and that has done the trick for me. I still don't sleep like I used to, but it certainly is better, and the dosage is about half of the typical dose.
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Hayley
Oklahoma

3/35/2009 - Diagnosed, age 39
5/7/09 - Mastectomy and reconstruction started. Two tumors found. Tumors were side by side. DCIS tumor was 2.8 cm, ER-, PR-, grade 2. Invasive tumor was 1.1 cm, poorly differentiated, grade 3, ER+90%, PR+95%, HER2+3. Thankfully, no node involvement.
5/29/09 - Second surgery resulting from difficulty healing from mastectomy.
6/2/09 - Began Herceptin treatments
6/23/09 - Began Taxotere and Carboplatin treatments along with Herception every 3 weeks.
10/06/09 - Completed Taxotere and Carboplatin - Yeah!!!
10/27/2009 - Herceptin maintenance and began Femara
12/10/2009 - 2nd stage reconstruction surgery
2/2010 - Body rejected saline implant
3/18/2010 - Second stage reconstruction using silicone implant
5/4/10 - Completed Herceptin - YEE-HAA!
May '10 - Body rejects silicone implant...taking a break.
11/29/10 - Hysterectomy
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Old 03-08-2010, 08:07 PM   #3
caya
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Re: insomnia

Same here Julie. I take Imovane - there are 2 doses - 5 mg. and 7.5 mg. I usually take one or the other. My docs don't mind that I have been on them more or less for about 5 years now ( I had other issues before B.C.).
You need your rest. Don't be afraid to ask your onc. or G.P. for meds.

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 03-08-2010, 08:30 PM   #4
Yorkiegirl
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Re: insomnia

I as well have found that I don't sleep well since my DX in 2005.
I only get about 3 hours of sleep a night. I don't want to have to take sleeping pills for thsi as I don't want to get addicted.
I guess I have just become so used to it. The only time I get a good sleep is if I'm sick and not feeling good.
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Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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Old 03-08-2010, 09:10 PM   #5
Margerie
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Re: insomnia

I also have terrible insomnia, started during chemo. I take melatonin + either Benadryl or Unisom (another OTC anti-histamine that causes drowsiness) and that works really well for me. It is the truth when I say that if I did not take this combo, I would not sleep a wink, ever! Trust me, I have tried.

I had no luck with any of the sleeping pills, and did not want to take them long term anyway. I am going 4 years strong with this insomnia, so I don't think it is going away anytime soon :O

Tell your doctor and find out your options. I found a naturopath doc and he was the one who helped me find the right supplements to help me sleep.
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Are we there yet?


Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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Old 03-10-2010, 07:18 AM   #6
Sheila
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Re: insomnia

Julie
I have had problems during this journey also....my onc. ordered Ambien, but I have never taken it....don't want to take the chance of "getting hooked" on it....funny I should be frightened by a sleeping pill, but let them pump chemo agents in my veins without a blink!
I have found that AdvilPM (contains more Benedryl) works the best...i take 2 tabs about 1 hour before bedtime....no groggies the next day either!
Hope this helps
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 03-10-2010, 09:13 PM   #7
jhandley
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Re: insomnia

You might have adrenal fatigue. Insomnia is one of the symptoms and bc is very stressful so adrenals can just get exhausted. You can get saliva tests for cortisol or see a good naturopath like I did. It helps.
Cheers
jackie (down under)
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Old 03-10-2010, 09:42 PM   #8
vlcarr
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Re: insomnia

I've had the same problem since diagnosis and seemed to get worse during chemo. I'm taken Ambien and Lunesta. I don't have right now but think I'm going to have to ask for refills......
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Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 04-04-2010, 10:33 AM   #9
BMW2
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Re: insomnia

Hi: Can anyone tell me how much Melatonin to use? I use Melatonin (usually 6mg), sometimes Simply Sleep and sometimes Restoril 7.5mg. I would like to stick to Melatonin because I have heard it helps with breast cancer, but because it is a hormone I'm concerned.
__________________
Mammograms all along since I was 40 yrs old.
Two negative biopsies.
Mammogram in Feb 2000 at the age of 52.
Told me to return in 6 months.
BSE in Jul 2000 found lump the size of an apricot (4x2x2cm) in my left breast. Unable to be detected in mammogram.
2 encapsulated lymph nodes out of five.
ER+ Neither Her2 positive or negative.
Invasive carcinoma with small amount of duct carcinoma in situ.
Did adjuvant A/C therapy, then bi-lateral mastectomy, Taxol, radiation. DIEP reconstruction at Johns Hopkins. Tamoxifen for 3 years.
Arimidex for 5 years.

April 2009 noticed red puckering of skin site of left breast reconstruction. Oncologist thought it was benign.
Cancer returned. No metastasis.
Surgery in April 2009 of left reconstructed breast.
ER+ 90%, PR-, Her2 3+ 70%
TCH and radiation again.
One year of Herceptin (one more Herceptin and then I will be done end of April 2010).
Back on Tamoxifen.
Have not decided if I want to stay on Herceptin for another year.
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Old 04-04-2010, 10:51 AM   #10
Rich66
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Re: insomnia

Cancer treatment has been shown to mess with sleep even after it's completed.
A number of studies have used 20mg of Melatonin. Some suggest ramping up to that dosage. It might not be wise to combine that with sleep meds.
There's a fair amount to suggest "sleep hygiene" routines can help: Excercise earlier in day/get sunlight, lower the overall lighting in hours before going to bed in absolute darkness etc. I find lavender drops on the top blanket help me relax.
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Old 04-04-2010, 10:56 AM   #11
BMW2
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Re: insomnia

Thanks Rich66. I do all the sleep hygiene stuff and more. I think I'll try uping the Melatonin on a gradual basis to see if it helps.
__________________
Mammograms all along since I was 40 yrs old.
Two negative biopsies.
Mammogram in Feb 2000 at the age of 52.
Told me to return in 6 months.
BSE in Jul 2000 found lump the size of an apricot (4x2x2cm) in my left breast. Unable to be detected in mammogram.
2 encapsulated lymph nodes out of five.
ER+ Neither Her2 positive or negative.
Invasive carcinoma with small amount of duct carcinoma in situ.
Did adjuvant A/C therapy, then bi-lateral mastectomy, Taxol, radiation. DIEP reconstruction at Johns Hopkins. Tamoxifen for 3 years.
Arimidex for 5 years.

April 2009 noticed red puckering of skin site of left breast reconstruction. Oncologist thought it was benign.
Cancer returned. No metastasis.
Surgery in April 2009 of left reconstructed breast.
ER+ 90%, PR-, Her2 3+ 70%
TCH and radiation again.
One year of Herceptin (one more Herceptin and then I will be done end of April 2010).
Back on Tamoxifen.
Have not decided if I want to stay on Herceptin for another year.
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Old 04-04-2010, 11:21 AM   #12
juanita
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Re: insomnia

i used the melatonin after my insurance compnay decided i didn't need what the doctor perscribed anymore. and i couldn't take the tylenol pm because benadryl makes my restless legs worse. make sure you check with your doctor on any of it.
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 04-04-2010, 01:08 PM   #13
BMW2
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Re: insomnia

Juanita:

Thanks I always check with the oncologist, but he always says"sure you can take that." But never says how much. I've checked a naturalpathic doctor and she recommended 20 milligrams. I know that's is what I've seen recommended for breast cancer patients.
How many milligrams do you take and does it help?
__________________
Mammograms all along since I was 40 yrs old.
Two negative biopsies.
Mammogram in Feb 2000 at the age of 52.
Told me to return in 6 months.
BSE in Jul 2000 found lump the size of an apricot (4x2x2cm) in my left breast. Unable to be detected in mammogram.
2 encapsulated lymph nodes out of five.
ER+ Neither Her2 positive or negative.
Invasive carcinoma with small amount of duct carcinoma in situ.
Did adjuvant A/C therapy, then bi-lateral mastectomy, Taxol, radiation. DIEP reconstruction at Johns Hopkins. Tamoxifen for 3 years.
Arimidex for 5 years.

April 2009 noticed red puckering of skin site of left breast reconstruction. Oncologist thought it was benign.
Cancer returned. No metastasis.
Surgery in April 2009 of left reconstructed breast.
ER+ 90%, PR-, Her2 3+ 70%
TCH and radiation again.
One year of Herceptin (one more Herceptin and then I will be done end of April 2010).
Back on Tamoxifen.
Have not decided if I want to stay on Herceptin for another year.
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Old 04-04-2010, 04:43 PM   #14
Jackie07
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Re: insomnia

Found the following links and thought might be helpful. There are two types of melatonin - one derived from animal and the other synthetically made.

http://familydoctor.org/online/famdo...interview.html

http://www.nlm.nih.gov/medlineplus/d...melatonin.html



I've had sleeping problem all my life due to the brain tumor(s). Once I had the tumor removed, I slept well and my skin improved. Now that two of the three residue tumors are enlarged in their sizes, I guess my very sensitive, twice injured brain just can't handle it. Sleep aids wouldn't work for me since my problem is more 'physical' than 'chemical'.

Found this other link regarding DSPS - perhaps this is what I have. Alright! I am going to pursue a career in medical transcription...

http://en.wikipedia.org/wiki/Delayed...phase_syndrome
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

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Old 04-04-2010, 05:00 PM   #15
mrsd
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Re: insomnia

Julie I too have had diffficulty with sleep... and knowing that we really need our rest only seems to make it worse. I started taken 2mg of Ativan at night... not sure how much it helps but I do sleep and feel rested when I wake.
__________________
Intial Dx Sept3,2002, age 39
Masct/ Sentinel Node Biopsy Sept 11,2002 node negative
ER/PR- Her2+++, grade 3
Started AC Chemo Nov 2002, 4 rds
2003 NED
May 2004 reconstuction, saline and later silicone implant
Aug 2006 Dx recurrence, lymph nodes chest/lungs/sternum
Dec 2006 Herceptin q three weeks
May 2007 bone mets to sternum
June 2007 aredia for bone mets
June 2007 radiation to sternum X 5
June 2008 slow progression of lung met, all other mets NED, continue Herceptin, Aredia, add Xeloda
July 08 Stopped Xeloda, severe side effects from the drug, but it did a fantastic job after only 12 days at least 50% reduction
Feb 09 Started Navelbine with herceptin, slight progression in lungs.
July 09 - Nov 09 had a Navelbine holiday...
Nov 09 back to Navelbine, Herception
Feb 10, lungs have improved but 4 small lesions on liver, started Taxol, Herceptin....
Taxol not the magic drug for me
Continuing Herceptin,Aredia,and adding Xeloda once again..reduced dose
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Old 04-04-2010, 08:04 PM   #16
juanita
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Re: insomnia

i started with a higher dose of the melatonin, think maybe 15 mg but now only take 3-6 mg. hopefully i can sleep eventually.
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 04-04-2010, 10:42 PM   #17
harrie
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Re: insomnia

I like to take children's liquid benedryl. 1/2 a tsp usually does it and at the most, I would take 1 tsp.
That is the ingredient in more OTC sleep aids.
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 04-05-2010, 11:31 AM   #18
Midwest Alice
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Re: insomnia

I have had sleeping problems so my onc put me on ambienxr. I sleep so well and am rested. I work full time and have a normal life with join pains. I have been on it for two years with no plans to get off. I need my rest
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
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Old 04-05-2010, 12:04 PM   #19
BMW2
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Location: Ohio
Posts: 11
Re: insomnia

Hi: The children's liquid benedryl sounds like it might be something to try. I have 0.5mg ativan, but I don't like to use something that I may get hooked on. Also, I'm so unsure about the higher doses of Melatonin.

Thanks ladies.
__________________
Mammograms all along since I was 40 yrs old.
Two negative biopsies.
Mammogram in Feb 2000 at the age of 52.
Told me to return in 6 months.
BSE in Jul 2000 found lump the size of an apricot (4x2x2cm) in my left breast. Unable to be detected in mammogram.
2 encapsulated lymph nodes out of five.
ER+ Neither Her2 positive or negative.
Invasive carcinoma with small amount of duct carcinoma in situ.
Did adjuvant A/C therapy, then bi-lateral mastectomy, Taxol, radiation. DIEP reconstruction at Johns Hopkins. Tamoxifen for 3 years.
Arimidex for 5 years.

April 2009 noticed red puckering of skin site of left breast reconstruction. Oncologist thought it was benign.
Cancer returned. No metastasis.
Surgery in April 2009 of left reconstructed breast.
ER+ 90%, PR-, Her2 3+ 70%
TCH and radiation again.
One year of Herceptin (one more Herceptin and then I will be done end of April 2010).
Back on Tamoxifen.
Have not decided if I want to stay on Herceptin for another year.
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Old 04-05-2010, 08:03 PM   #20
Bill
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Re: insomnia

I happen to know an older gentleman that had some trouble sleeping as he aged. He had no personal history or diagnosis of cancer. He went to a good doctor who recommended cutting back on his caffeine and sugar intake, modifying his diet to include more fruits and veggies, and less meat, and eat earlier in the evening. Also, the doctor recommended daily yoga exercises. Over a period of a few weeks/months he made those lifestyle changes and now he sleeps like a baby. I'd like to recommend the book "You, Staying Young", by Drs. Roizen and Oz. There is a wealth of information in this book, including sleep-related issues. Me, I just eat lightly at night and take half an Ambien.
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